She's in her mid 60's. She had some kidney infection decades ago, which left her thin all her adult life. A few years ago she had heart bypass surgery, which forced her to stop smoking. Her kidneys started to go downhill. A couple years ago, she started dialysis and got onto the waiting list.

It's been a hectic couple years waiting. The thing is to qualify for a transplant, you have to be sick enough that you need it (and the more urgent you need it, the higher on the list you are), but you have to be well enough that there's a strong chance you'll survive the surgery and be able to make use of it.

Last summer, she had a brain hemmorage - never did identify a cause, but suspect the Plavix she was taking to reduce platelets played a role. She was on Plavix because of her arteries being blocked up, and had a few rounds of surgery to unblock them. Anyway, that required brain surgery and several months to recover, but she has had an almost full recovery since.

So, I got a phone call on Wednesday that she was told they had a match and were working out the details, stand by for a call. Thursday morning early got a call from my dad they had the kidneys and were going to do the transplant. My parents drove in, and since the hospital is in Galveston, they'll be staying with me.

She went into surgery around 1 pm. Supposed to be a 6 hour surgery or so. They wanted her to have both kidneys because the donor was in his mid 60s and they were concerned about the age. However, when they were hooking up the second kidney, it was the one where the biopsy was taken for a tissue match, and it started spurting blood. Trying to work on that, she started bleeding from the other one as well. They tried to repair the second kidney, but ended up having to close her up with just the one and try to get her stable.

She's doing okay, as far as can be expected from a major surgery. In ICU, waiting to see if they've stopped all the bleeding. She's been conscious and coherent. She'll have to be in ICU for another couple days maybe, then hopefully get moved to a room. She'll be there for some time - a couple weeks?

So I have house guests for a while. Sounds like mom and dad will be visiting me until she goes home, then staying with her for a bit until her other brother returns from the trip he is on and can be with her.

Update: she's slowing getting better. Still in ICU today, but mostly because she's having trouble getting enough oxygen. They're still doing dialysis, mostly to drain off fluid to try to take pressure off the lungs to function better. She was sitting up today, with an oxygen mask and doing breathing exercises. Still having trouble ingesting anything without getting sick. Kidney seems to be improving, she's putting out more urine and it has less red, but they're still pumping her full of blood. 2 units today. Once they stabilize the oxygenation they'll move her to the private room. Then she still has a week or more there before going home.

Actually, they left the old kidneys in. One is pretty much shot, the other marginally functional, but they leave them in. I didn't know that before, either. The new one is apparently sitting in front where the appendix would normally be, with the rest of the intestines kinda shifted around to make room.

Things have been hectic and not going smoothly. After the initial surgery, she was in ICU for several days, slowly getting better. They kept her on dialysis. The new kidney was putting out some urine, but not really running at high speed yet. Everything in the literature and from the doctors said this is expected and very nominal. In about 40% of the cases, it can take months for the kidney to "wake up" and start working fully. So we were taking this as well as possible.

She had bad lung function, COPD from long term smoking. She was already using oxygen to sleep and when exercising. After the surgery, she was having trouble getting enough oxygen into the blood, so they had her on an oxygen mask, and were trying to use a CPAP to increase the oxygen. She wasn't happy with it, triggering feelings of claustrophobia, and resisted/negotiated against use. For a couple days, she was groggy, but slowly improving. But she was having a lot of pain in her abdomen. Then when she was trying to eat, she was having trouble eating, complaining of pain and trouble swallowing. The docs did testing over several days, trying to find out what was going on. They were talking about getting her well enough to go home. Then that plan changed to getting her well enough to transfer to a rehabilitation center. Then that changed to getting her well enough to go to a "skills center". Her pain and problems eating kept her from getting strong enough to get out of her bed and move around.

Finally, the found a tear in her intestine and an air pocket in her abdomen, probably gas from digestion. They went in to repair that, and also ended up removing her gallbladder, which was also inflamed. After that surgery, she was very groggy and sort of in a coma, not responding much. They said she wasn't being medicated that much, and it was a response to the surgery. We were concerned about cognitive damage, but a CAT scan and MRI didn't reveal any source of anomalies in the brain. So it was cautious wait out.

Finally the last couple days she's been starting to respond more. She was on a ventilator till a couple days ago, but now just on a oxygen mask. She's got a tube down to her stomach that was draining it for her intestines to heal, but now they are trying to feed her through it (today, I think). She's somewhat more alert. They've had to keep her arms restrained because she wants to pull the tubes out because they bother her. It's really frustating all around, but she seems to be improving again.

From the kidney standpoint, it seems to be working again. It stopped giving output, but now has started again. They biopsied and said there are no signs of rejection, everything seems as healthy as they can expect on that front. The transplant doctor is optimistic about her recovery.

It's still a waiting game to find out when she's well enough to get the tubes out. After that, they have to get her strong enough for 2 hrs a day of therapy to move her to the skills center, which will help her recover enough to go to rehab. It's going to be a long road even with the best outcome from here, but we hope they've solved the complications and she can now continue recovering.

On a side note, this has been stressful not just because of the worry over her condition, but also dealing with my family. Since I'm the closest person, living about an hour from the hospital and closer than her house even, my parents moved in to my guest bedroom so they could monitor her. They were there for 2 1/2 weeks, checking on her at the hospital daily, but also changing up my routine. Mom found plenty of opportunities to "help" me around the house. While it is nice to have things cleaned up and have tackled some of the chores I've been avoiding, it still was a bit annoying to have to buckle down and deal with them. Like cleaning and organizing the office so it isn't just a pile of boxes from my move in, but I can actually use the room and the furniture, and moving a bunch of storage items out of the living room. Cleaning the carpet in the den, which had a big stain from a soda spill. Etc.

Granted, I will admit those are necessary things and it was nice to have help doing them, even if I didn't want to have to do them. But that's not the stuff really annoying me. It's the little things. It's how she can't seem to leave anything well enough alone, and is moving and shuffling things around constantly. Not big things like furniture items, little things, like the placement of the coffee maker and toaster. The location of my incoming mail I haven't sorted. Finding sorting bins and shuffling what stuff is in which bin. If she shuffles the books on my shelves again, I may have to scream.

The other day, I needed some scotch tape. Wasn't in the drawer where I keep it. CRAP. Went looking around, found it on a small desk in the living room with some puzzle books I've acquired. No reason, just made sense to her.

Also, after the first 2 weeks, my uncle (dad and aunt's brother) started staying with me. He visits all day at the hospital. He comes and goes on his own schedule, I don't really mind as much, he takes care of himself and doesn't go moving things around on me. Fortunately, with aunt's health improving again, my parents are headed home today, so it will just be my uncle.

The complications continue. So my aunt continued to have troubles with eating. They started feeding her opium to calm the intestine, it wasn't supposed to absorb much, but she seemed really out of it. That went on for a few days. My uncle finally suggested she was sensitive and they should dial it back. Meanwhile, her white cell countinued to rise. There was some sort of infection still going on. So Saturday they went back in for more surgery, to find the infection and clean things out.

But they did one more round of testing before the surgery, and the doctor decided the kidney probably wasn't working and needed to be removed. They went in Sat afternoon and removed the kidney. It was the right call - the new kidney was swollen to twice the size and discolored and splotchy - the doctor said it looked bad. They also cleaned the intestine and said it looked a bit inflamed but good and not infected. So there's that.

Anyway, my aunt was still heavily sedated yesterday trying to recover from the surgery. She was barely responsive and probably won't remember much. Her white cell count has started to fall, so that is good news. Maybe she can start to get better.

Though what "better" means at this point is relative. She's been flat on her back for 6 damn weeks going through utter hell. She hasn't had much food intake, and was emaciated to begin with. She is skin and bones, and was fairly weak beforehand. 6 weeks of doing nothing is going to have taken a lot out of her body. Plus, she previously had problems with blockages in the legs, so the lack of motion and excercise has got to have exacerbated that. Will she even be able to recover her mobility? Is she going to need more procedures on her legs again?

Meanwhile, we asked about her status on the transplant list, mostly because her stepson was stressing over it. The doctor said that it would take 6 months minimum to allow her body to stabilize and try to reduce the inflammatory response and antibody production from this round. Then, if she is interested, they would put her back on the list, but it she would have to be reevaluated for status and would move to the bottom of the list again. And one concern is that if this kidney was being rejected and her body was making antibodies, that may not go away, which means any future attempt will be harder to take because she already has antibodies for rejection.

That bolded sentence is perhaps the key sentence. She has been through 6 weeks of hell. She commented to my mother after the first week, when she was on the upswing from the initial surgery, that that was the worst experience she'd ever been through - and she's had 5 more weeks of horrendous procedures, ventilators, feeding tubes, daily dialysis, intestinal discomfort, lung issues, and just generally being tied down in bed so she wouldn't pull the tubes out of her lungs.

In fact, her responses the last week, when not too groggy from meds was to be combative and resistive to treatment. We're worried she's mentally given up.

I just don't know how to react. I spent most of Saturday and made the trip again Sunday to see her, but there's not really anything I could do. I just expect all we can do from here is tell her we love her and support her in whatever she decides.

But this experience has been a colossal clusterfuck. The thing is, I can't fault the decisions along the way, they were medical gambles made with the best of intentions. And I can't say this outcome was a given - without one or another of the complications this may have all worked out. But the end result we have now after 6 weeks is my aunt has been bedridden and has moths of therapy to be able to have any recovery at all, and chancy she may never get back to even where she was, and then the very high likelihood she won't want to go anywhere near being considered again. Which means dialysis until her body gives up.

Dialysis isn't a permanent solution. It mostly works, but over time the body gets worn down. It won't last a lifetime. Right now, we don't have any idea how long she's got, whether she'll recover her independence or will have to end up in full time care (which she certainly will be in for a while).

It's just a crying shame and there's nothing left to do now but try to get her as healthy as possible, give her love and support, and tell her that she took the best shot she was given.

This just sucks.

Oh yeah, of course they're going to do a full pathology to determine the cause of the failure. We don't know how bad it was to begin with. The donor was a 67 year old man, and someone else rejected them for my aunt to be considered. The doctors at the time argued they had to get both or it was a deal breaker. They were banking on any age and status factors getting balanced by my aunt being a small woman and getting both kidneys, figuring even reduced performance from two from a big man would be reasonable to serve her needs. But then one started hemorraging, and then she had the intestinal tear, and then....

Oh geez, I'm sorry to hear she's going through such a rough time. Most people think that once you've got a transplant, you're set, but obviously that isn't the case. Wishing her and your whole family the strength to get through this.

I just expect all we can do from here is tell her we love her and support her in whatever she decides.

Yes. Exactly this.
Your aunt has been through a whole lot. She might just be tired of it all. She knows what is best for her. Your best bet is to just go with whatever she decides.

You, your aunt, and your family are in my thoughts, and I wish the very best for her.

I'll tell you my story.

I watched my mom die of kidney disease. She was diabetic. She got so bad that she needed a kidney transplant, and I offered to be a donor, even though she didn't ask me to. She was my mom, and I would have done anything for her. I am diabetic, and they wouldn't use me.

My daughter told my mom, without my mom asking her, that she would be a donor, but my mom didn't pursue that option.

My mom asked my half-sister if she would be a donor, but she told mom that she didn't want to, because the thought of it scared her.

Mom was on The Transplant List, though. She had other, equally serious problems which put her farther down on the list.

Mom finally gave up after two years of dialysis. I went along with mom's decision. I was mom's POA and Medical POA. She was ready to go, and she was very tired, very miserable, and had no quality of life. Everyone that knew my mom said I did the right thing by abiding her decision.

My half-sister has cut off all contact with me, because she thinks that I helped to 'kill' my mom, because I 'didn't do anything' to keep her alive. Mom signed papers for a DNR order, and also that she wanted no further medical treatment. She was just too worn down for anymore.
I'm ok with that, though. I know it was what mom wanted.

So, yeah. Again, just go with whatever your aunt decides. She knows what is best for her, and that's what really matters.

My mom asked my half-sister if she would be a donor, but she told mom that she didn't want to, because the thought of it scared her.

My half-sister has cut off all contact with me, because she thinks that I helped to 'kill' my mom, because I 'didn't do anything' to keep her alive. Mom signed papers for a DNR order, and also that she wanted no further medical treatment. She was just too worn down for anymore.

I'm ok with that, though. I know it was what mom wanted.

Sounds like your half-sister has a lot of nerve, treating you like that.

The upside of this being so close to me is that I have managed to go up there a few times to see her, and I get daily updates from the family doing the visits. As opposed to my brother, who lives in Colorado. I did call and talk to him after the surgery. Apparently he hasn't been kept up to date.

nonacetone, I've been trying to encourage her and be positive without putting any demands upon her. Just letting her know she is loved. It hurts to watch her feel so poorly. I can definitely understand why she might feel that way.

I had another aunt who had cancer and made the decision not to fight it and had medical care to ease her passing. Sadly, this is not the first time I've faced the situation. Not that it gets better with experience.

Status update: the first unmitigated good news. Yesterday, she was conscious and alert, she had her sense of humor, and she was cooperating with the doctors and physical therapist. Really had a big turnaround in outlook and attitude.

They moved her from ICU to a patient room. The one remaining hurdle is getting her to eat enough. She's off the feeding tube, but getting enough food in her is still a challenge. Yesterday, she was supposed to eat three Ensures.

They're planning right now to transfer her out of the hospital on Monday to a care facility to begin her rehab. We're discussing putting it closer to her home. Pending her eating situation.

Still going to be rough and long, but I'm happy she seems to feel a lot better.

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